Time is running out for Kathy Luttrell and her developmentally disabled daughter Jenny.
Jenny is 43. She is mute, hearing-impaired, visually impaired and what they call behavior disordered, which means she can be very hard to handle.
She also knows how to read and write and communicate by sign language, which adds to the quality of her life but also the complexity of her care.
“She gets bored, and, when she gets bored, all hell breaks loose,” said her mother, explaining that one of Jenny’s most troubling behaviors is biting her own hands when she’s upset.
“You can always tell whether she’s had a good day or bad day by whether her hands are bloody,” Luttrell said.
Luttrell is 74 and her daughter’s sole caretaker. They live together in Lombard except for the five hours each weekday Jenny spends in an adult day program offered by the Ray Graham Association.
The problem is that Luttrell would like to get Jenny moved into a full-time care facility for adults with disabilities like hers, preferably a small group home with a few roommates, while she can still help smooth the way. But no openings are available, and Luttrell isn’t getting any younger.
“I can’t plan on living forever,” she told me.
That’s something you hear a lot from people in Luttrell’s situation. And there are far too many in Illinois.
There are no group home openings available for Jenny Luttrell primarily because the private nonprofit organizations that provide those services for the state of Illinois are unable to hire enough staff to open more facilities.
And they can’t hire people to staff the homes because of the low wages they can offer, a direct result of the low reimbursement rate the state pays them.
As you could probably guess, this brings us back to the Illinois General Assembly and the state’s annual budget process.
There’s a tendency, and to this I plead somewhat guilty, to imagine the state’s problems with funding social services would be resolved after Bruce Rauner’s budget impasse was broken and Democrat J.B. Pritzker succeeded him as governor.
In truth, the state’s failure to adequately fund the care of individuals with developmental disabilities long preceded Rauner’s arrival in Springfield and remains an issue under Pritzker, with thousands of people wait-listed for services.
Advocates for the disabled are back in Springfield to fight for more money. I can’t abandon them now.
They want a wage increase for what they call “direct service professionals” who staff their facilities.
These are extremely demanding front-line jobs that require a special kind of person who has the patience, savvy and empathy to work with those with special needs.
The work can be very rewarding. But those rewards are not of the financial variety. Even after small increases appropriated in each of the last two state budgets (after a decade without), these staffers are still paid a starting wage averaging only $10.50 an hour.
Recently enacted increases in the state’s minimum wage have only complicated the difficulty of attracting and retaining workers willing to take on the challenge of caring for individuals who often need help with basic tasks such as eating, bathing and taking medications.
The state is barely paying enough to allow nonprofit providers to keep pace with the current minimum wage — and soon will fall behind if the reimbursement is not increased.
Kim Zoeller, president and CEO of the Ray Graham Association in Lisle, said organizations like hers actually need to pay a healthy cushion above minimum wage to attract workers.
As one of the Chicago area’s leading providers of services to children and adults with disabilities, Ray Graham has strong fundraising capabilities but still has high turnover and chronically unfilled positions across its programs.
“We turn a good number of people away every year because we can’t staff new homes,” Zoeller said. “Our system as a whole has been at a standstill.”
Kathy Luttrell even explored offering her own house for use as a group home, with the idea she would move into an apartment, only to learn that wouldn’t help.
“It’s not about finding the home. That’s the easy part,” Zoeller said.
The hard part is staffing it for up to 24 hours a day.
Luttrell said she just wants to see Jenny settled into a new home before she dies and it becomes an emergency.
It doesn’t seem like that much to ask.